'Sister survivors': Latinas band together in breast cancer battle

By Elizabeth Landau, CNN

Updated 2:23 PM ET, Thu October 10, 2013

Photos: Notable Hispanics in medicine12 photos

Notable Hispanics in medicine – Argentine-born biochemist Cesar Milstein shared the 1984 Nobel Prize for Medicine with Georges Koehler of Germany and Niels Jerne of Denmark. The scientists developed a way to produce monoclonal antibodies, which are used to treat some forms of cancer and several autoimmune diseases.

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Photos: Notable Hispanics in medicine12 photos

Notable Hispanics in medicine – Dr. Jacinto Convit, a Venezuelan researcher, is best known for developing the leprosy vaccine. In 1988, he was nominated for a Nobel Prize in medicine. He's 100 years old and still working -- now on a vaccine to fight cancer.

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Photos: Notable Hispanics in medicine12 photos

Notable Hispanics in medicine – Pathologist Manuel Patarroyo of Colombia created the first synthetic vaccine for malaria and donated the patent to the World Health Organization. Vaccine SPf66 is now inactive, according to WHO, but Patarroyo continues to work to improve the vaccine's effectiveness.

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Notable Hispanics in medicine – Francisco Varela of Chile was both a biologist and a philosopher. Together with his mentor, Humberto Maturana, Varela co-authored the theory of autopoiesis, which describes the ability of biological cells to be "self-maintaining."

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Notable Hispanics in medicine – Dr. Antonia Novello, a Puerto Rican pediatrician who specializes in kidney problems, was the first woman and the first Hispanic to be U.S. surgeon general. She served under President George H. W. Bush from 1990 to 1993 before leaving to work for UNICEF.

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Notable Hispanics in medicine – Immunologist Dr. Baruj Benacerraf of Venezuela is credited with discovering the immune response genes that determine if a transplant organ will be rejected or accepted by the recipient's body. He won the Nobel Prize in medicine in 1980 for this discovery. His later studies on the immune system explored why some people are more at risk for developing diseases such as multiple sclerosis.

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Notable Hispanics in medicine – Luis Federico Leloir, a biochemist from Argentina, won the Nobel Prize in chemistry in 1970 for his investigations into the way carbohydrates are converted into energy in the body.

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Photos: Notable Hispanics in medicine12 photos

Notable Hispanics in medicine – Argentine Dr. Rene Favaloro became the first surgeon to perform a coronary bypass surgery on a patient suffering from coronary artery disease. "Dr. Favaloro revolutionized the natural history and quality-of-life of patients with ischemic heart disease," an obituary published in the journal Circulation said. "It is not surprising that Dr. Mason Sones once said that 20th century cardiology can be divided into the pre-Favaloro and the post-Favaloro eras."

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Notable Hispanics in medicine – Dr. Humberto Fernandez Moran was a biophysical researcher. He founded the Venezuelan Institute for Neurological and Brain Studies, but is perhaps best known in the medical field for inventing the diamond scalpel, which is used to cut very thin samples of biological tissues.

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Notable Hispanics in medicine – Mexican chemist Luis E. Miramontes synthesized norethisterone in 1951 at the age of 26. This chemical compound was then used to create the first contraceptive pill.

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Notable Hispanics in medicine – Dr. Bernardo Alberto Houssay of Argentina shared the 1947 Nobel Prize in medicine for his research on the role of pituitary hormones in the regulation of blood sugar, which helped doctors better understand diabetes.

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Notable Hispanics in medicine – Dr. Carlos Finlay was one of the first to realize that mosquitoes were transmitting yellow fever, a disease that was hitting his native Cuba hard in the mid- to late 1800s.

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Story highlights

Hispanics have a lower cancer incidence and mortality than whites and blacks

This phenomenon is part of what is called the "Hispanic paradox"

Financial and linguistic barriers in the Hispanic community can hinder treatment

Last summer, Jessica Rodriguez didn't want to go outside, or even open the door. She didn't want anyone to see she had lost her hair during breast cancer treatment.

Rodriguez, 39, said she found strength from the support of her husband and children, and through an organization called Nueva Vida, a support network for Latinas with cancer based in Washington. At support meetings, she met other women who had lost their hair in cancer treatment and realized she was not alone.

"They were going through the same," said Rodriguez, who moved to the United States from Peru 12 years ago and now lives in Germantown, Maryland. "I say: They're OK. It's only the hair. It's going to go grow back."

Some Latina breast cancer survivors such as Rodriguez have found comfort and assistance from organizations geared toward Hispanics. Nueva Vida and other groups are trying to address needs such as breaking language barriers, paying for treatment and finding support from others going through similar challenges.

Rodriguez said she didn't know how she could have paid for treatment without Nueva Vida. It introduced her to a Maryland state program that covered her surgery, chemotherapy and radiation.

Jessica Rodriguez, second from left, with her son Gregory, daughter Caroline, and husband Guillermo Ramirez.

"I may be not talking to you," she said. "I don't know. I don't think I could have made it without all the help."

What the statistics say

Cancer remains a major health problem among Hispanics, but statistics show they are at a surprising advantage compared with some other ethnic groups. Researchers are trying to figure out why.

In the United States, the death rate from all cancers among Hispanics is about 129 per 100,000 people per year, compared with 191 per 100,000 for whites and 239 per 100,000 for African-Americans/blacks, according to the National Cancer Institute. Breast cancer incidence and mortality specifically are also lower among Hispanics than whites or blacks, according to the American Cancer Society.

The figures are puzzling, given that Hispanics have a lower socioeconomic status on average than whites. Data from the Pew Research Center suggests the typical Hispanic household had $6,325 in wealth in 2009, while the typical white household had $113,149.

Even more curiously, a 2013 study in the International Journal for Equity in Health found that, among Hispanics in Texas, mortality rates for several cancers, including breast cancer, tend to be lower among those with more socioeconomic deprivation. A low mortality rate does not correspond with low socioeconomic status in whites and African-Americans, the study found. More research needs to be done to confirm these findings.

The phenomenon associating Hispanics with better health outcomes despite lower average income and education rates is called the "Hispanic paradox." A possible explanation for this trend is that smoking is much less common among Hispanics than non-Hispanic whites or African-Americans, according to the Centers for Disease Control and Prevention.

Another theory is that people who immigrate to the United States tend to be healthier than those who stayed in their home countries. It's also possible that some who get sick return to their home countries.

A 2013 study in the journal JAMA Surgery focusing on young women with breast cancer, ages 15 to 39, found that the time between diagnosis and treatment of breast cancer differed significantly depending on the ethnicity of the participants. Researchers found that about 15% of Hispanic and African-American women waited more than six weeks for treatment, compared with 8% of non-Hispanic white women. Longer waiting periods are linked to shorter survival time, the study found.

Dr. Mariana Chavez MacGregor, breast oncologist at MD Anderson Cancer Center in Houston, said she believes that access to health care is partly responsible for the later detection of breast cancer in Hispanic women.

"If people have no health insurance, doing a test for something you don't even have, it's really at the bottom of the list," she said.

There are also, she said, "probably cultural reasons in which we may have more difficulty dealing with this and seeking medical attention."

Research is ongoing to narrow down the best ways to improve the quality of life among Hispanic breast cancer survivors and their caregivers. Nueva Vida is participating in a research project led by Kristi Graves at Georgetown University to figure out the best approaches.

The issues that tend to arise among Hispanic women who have breast cancer aren't unique to Hispanics, and it is impossible to generalize across individuals; there are also many cultures that fall under terms such as "Hispanic" and "Latina." Nonetheless, Graves and researchers have picked up on some themes that often arise.

"Breast cancer isn't always talked about in Latino families," Graves said. "In some of these families, when you mention cancer it's considered synonymous with death."

Some survivors Graves has spoken with didn't tell their families about the cancer diagnosis until they had to start chemotherapy, because they didn't want to worry them.

"For some of the women, when they did start talking about cancer, they were really pleasantly surprised at the amount of support and information that they received," Graves said.

For women whose first language is Spanish, translation may be an issue. They may have a hard time finding a physician with whom they feel comfortable, and who can adequately explain treatment options and procedures.

When family members step in to translate to doctors, some women hold back important details. For instance, one woman Graves met didn't tell her doctor about the problems with sexual functioning she was having during treatment, because her daughter was translating for her.

In her study, Graves will be testing an intervention in which survivors and caregivers share their concerns separately, in different groups, led by a facilitator, and then everyone comes together to talk about the topic.

When tried on a smaller scale, "(facilitators) delivered information separately to the survivors and caregivers; it seemed that each group could open up further and talk about their own specific needs," Graves said.

Getting help

Another community organization supporting Hispanic breast cancer patients is called Comadre a Comadre in Albuquerque, New Mexico. A comadre is a "non-biological close female kinship" in "the Hispanic/Latino extended family unit," the website explains.

This group was founded by six survivors and director Elba Saavedra, who is also an assistant professor for research at the University of New Mexico College of Education.

Dalila Romero is a breast cancer survivor who helps patients through Comadre a Comadre.

The organization works with women in a nonclinical setting, giving them resources and support during their breast cancer treatment. A grant from the Susan G. Komen for the Cure helped jump-start Comadre a Comadre in 2003. The organization offerssupport groups and classes in Spanish and English, one-on-one support and financial assistance.

Comadre a Comadre is trying to get out positive messages about screening and break down some of the cultural barriers. For instance, many women put the needs of the rest of their family before their own.

"We need to be there for children and grandchildren; it's important we get in there and get those mammograms," Saavedrasaid.

Dalila Romero, a co-founder of Comadre a Comadre, had breast cancer in her mid-40s. At the time, she had recently lost her mother to pancreatic cancer.

The support group she tried didn't resonate with her; she couldn't connect with the women there, who had different backgrounds and life stories from her own.

"Not knowing the resources in the community, I had to basically support myself because I didn't know what the outcome was going to be," Romero said.

Now she goes with women with recent diagnoses to their initial appointments for chemotherapy, radiation and surgery to help them navigate the system.

Some women are private about their struggle with cancer, so much so they don't want to sit around other women who have it. Romero knows of one woman who moved because she didn't want anyone in her town to know she had cancer.

When she learned about Nueva Vida, Rodriguez immediately liked the idea of finding support in other women who also had cancer, but she held back at first in telling her parents in Peru until doctors were sure of what it was.

"I didn't want my mom to get sad because she's over there and I'm here," she said. "I didn't want to worry them. I took time to tell them."

Clear of cancer, Rodriguez is currently a Zumba instructor through Nueva Vida, and loves teaching. The women in this organization have a lot of need, she said.